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    I was curious about who I discuss my post IO treatments with. Do I discuss my radiation/surveillance options with my urologist, oncologist or gp doctor? I have an appointment with the oncologist on Tuesday and I think that I want to elect surveillance. This decison was based on the tumor being 2.5cm, almost 42 years old and no evidence of LV invasion. I am one that would follow through with the schedule of labs, scans, etc... I would have to go through with periodic checks even with radiation, wouldn't I?

    Also, I was born with a hernia that never closed and was repaired when I was about 9year ols. I am assuming this is why I had a higher risk of developing TC. Does anyone know if there is an increased risk of having cancer in the other testicle for someone in my situation?
    --- Jim ---
    Dx pure seminoma 8/1/07
    Left IO 8/7/07
    CT 8/14/07 two enlarged nodes
    RT starts 9/04/07

  • #2
    Interesting about the hernia. I had an undiagnosed hernia from sometime in childhood until I was 22. Diagnosed with Tc at 37. My docs say there is no relation, but I have heard this from others as well.

    I think the Oncologist is best to discuss surveillance vs. treatment options.
    Stage III Non-Seminoma- 7/11/06
    Right I/O 7/12/06
    Completed 4x BEP 11/06
    Bi-Lateral RPLND (Dr. Shenifeld)- 11/27/06
    Surveillance since then

    When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.
    Lance Armstrong.

    Comment


    • #3
      Wireless...gotta throw my 2 cents in here. Just as Boyce said, he also had a hernia and we have been told there is no connection...but after talking to many TC people, I refuse to believe that. His hernia and his TC were effecting the same testicle.

      On your other question, if you should follow up with urologist, oncologist or GP. I strongly hope you do not follow up with your GP. I just do not feel there is enough experience there regarding TC with most GP's to feel safe that they would catch something early enough.

      We were told in the very early stages, that if we needed surveillance we would be only dealing with the urologist. Sadly, that was not an option for us...but I think that if you go on a surveillance program, a urologist would be the likely choice. That being said, I would make sure that the urologist you choose would be experienced in matters regarding TC.

      best of luck!
      Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
      Current DVT
      Current testosterone replacement therapy, Testim.

      "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

      Comment


      • #4
        Your oncologist is your cancer doctor. You should consult with him. Your urologist is a valuable resource and you can also consult with him, but other than making sure you heal well, his job is about done (although with my urologist, he had seen many TC cases, and wanted additional followups). However, most oncologists do not see all that many TC cases, so it is important for you to be educated to make sure what he tells you is accurate - on all the alternatives. Even if you are considering surveillence, you should should probably consult with a Radiation Oncologist - if nothing else but to be able to ask questions.

        I never had a hernia, but it is interesting the connection. When I asked my urologist if there was a cause for my TC, he said no - some heredity connections, some environmental connections, some connections to trauma or other problems, but mostly it just happens to some of us. That was a good enough answer for me at the time.
        Right I/O 4/17/06, Seminoma Stage Ib
        RT (15 days) completed 6/1/06
        All clear as of 5/8/09

        Comment


        • #5
          Thanks...

          Thanks for your inputs. This is a hard decision to make. Part of me wants to go ahead and do the radiation to make sure to get whatever might be in there, but then the other part of me says why go through this if it really isn't necessary.

          Oh well, I'll discuss it with the oncologist on Tuesday and take it from there.
          --- Jim ---
          Dx pure seminoma 8/1/07
          Left IO 8/7/07
          CT 8/14/07 two enlarged nodes
          RT starts 9/04/07

          Comment


          • #6
            Hey again,
            The person running the show is the medical oncologist. The choice of surveillance is a good one as long as you follow the schedule of labs "to the T". As I may have said before, your case is quite similar to mine. If you undergo XRT, I believe you don't get CT scans, but you still get markers and chest X-rays with certain periodicity.
            The hernia connection is one that I don't find convincing, and I have not read any studies to that effect. I know that such a connection is being studied though. Hernia or not, the chance of developing contralateral TC (i.e. in your remaining boy) is about 5%. This is why you should continue doing self-exams every so often.
            Best of luck with your appointment on Tuesday. This week I won't be online as much, but I'll try to keep up the best I can. Cheers,
            "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
            11.22.06 -Dx the day before Thanksgiving
            12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

            Comment


            • #7
              RT it is...

              Well I was all prepared to make my case for surveillance yesterday when I saw my oncologist, but then he showed me the results of my CT. He showed me that there were two enlarged lymph nodes. He told me that he couldn't tell me whether they were cancer or not, but said that he believed that I would benefit from the RT. I then agreed. I would rather go ahead and have the treatments now and be safe than to maybe have it spread if it is cancer. So...I go in on Monday for the simulation and such and then the treatments will start on the 4th of September. I'm going to have 14 teatments and then the required followups thereafter.

              It wasn't the news I was hoping for or expecting, but it wasn't all bad either.
              --- Jim ---
              Dx pure seminoma 8/1/07
              Left IO 8/7/07
              CT 8/14/07 two enlarged nodes
              RT starts 9/04/07

              Comment


              • #8
                I am pulling for you Wireless!
                Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                Current DVT
                Current testosterone replacement therapy, Testim.

                "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

                Comment


                • #9
                  It may not be the news you were hoping for but now you have a plan for a cure. Any visit where a doctor can point you toward a cure is a good visit.
                  Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                  Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                  Comment


                  • #10
                    Ah... the CT results change things a bit, and under those circumstances, RT is probably the better course of action. Still, it is evident that the diligence you are showing will pay off, and you will be cured in no time. Look at it this way: the only waiting you will have to do is for the treatments to begin, and there is some degree of certainty in that (as opposed to waiting for results). Plenty of guys here have undergone XRT, so the guidance will be here for the taking. Time to move forward!
                    "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                    11.22.06 -Dx the day before Thanksgiving
                    12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

                    Comment

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